Keeping the dream alive for children with Asperger's Syndrome

Changes to diagnostic guidelines

Since it was first published in 1952, most clinicians around the world have used the American DSM (Diagnostic and Statistical Manual) for guidance. Published by the American Psychiatric Association, the fourth edition (DSM IV) was replaced with the DSM V in May 2013.

How does this affect the Foundation?

In the months and years leading up to the publication of the DSM V, heated debate raged across the autistic community about the impending changes. One of the more significant changes to the manual was the removal of the term Asperger syndrome. Why was this done?

The DSM V set out to standardise guidelines for clinicians to facilitate the diagnostic process. The new manual also sought to eliminate the multitude of neurological disorders that have crept into the system over the years which have often caused confusion and sometimes even result in a misdiagnosis. Along with Asperger syndrome, other previously recognised conditions such as Rett’s, P.D.D.N.O.S. (Pervasive Developmental Disorder Not Otherwise Specified) and High Functioning Autism have all been relegated to medical history.

In general, clinicians now find their job somewhat easier, as they have only one possible diagnosis: Autistic Spectrum Disorder (ASD). To determine the severity of the disorder, we now have Levels 1, 2 and 3. Patients previously diagnosed as having Asperger syndrome would now probably be regarded as Level One or perhaps Level Two.

Ever since it was established in October 2000, the Cloud 9 Children’s Foundation has set out to help children with Asperger syndrome. Along with similar organisations in other countries and world renowned experts such as Tony Attwood, we have succeeded over the past decade in moving the term Asperger which was largely unknown to most people, to the point where almost everyone in society now has at least a vague idea of what the term means. School teachers today are right up to date on what it means to have a child in the class with a diagnosis of Asperger syndrome, a far cry from a mere five or six years ago when schoolteachers required explanatory help in dealing with highly intelligent, yet quirky and confusing students.

Thousands of adult Aspies, most of them self-diagnosed, have no intention of relinquishing the title Asperger. Indeed, many of them are immensely proud to be a part of what they regard as a sort of elite club. Children previously diagnosed with Asperger syndrome are hardly likely to now drop this diagnosis and exchange it for one of ASD.

While recognising and accepting the changes in the updated DSM V, the Foundation has decided to continue the use of the term Asperger in all its forms. To drop the term Asperger syndrome would be to abandon everything we have worked so hard to build up since the year 2000 and to turn our backs on our many members whose support we enjoy. By the same token, we don’t intend snubbing the DSM V as there is merit in the new diagnostic criteria.

For the foreseeable future, the Foundation shall refer to helping children with Asperger syndrome (Autistic Spectrum Disorder).